Part 6 – Darn it, I’m not done

I have the worst cold tonight, but I just can’t sleep.

After the five part series, many moms and friends asked for a succinct example to use to politely decline and discourage their schools from participating in Jump Rope for Heart.  One mom I’ve known a long time and is not my rebutter, raised two points about the AHA that I now must address.

1. AHA’s “other” research is important to all people including heart kids.

Let’s start with 1 because it’s easy.  She’s right and I’ve never ever disputed that we should all take better care of our hearts. BUT

  • Heart health research on healthy hearts will NEVER EVER repair or improve the core underlying heart defect. It misses the point and the need entirely and it’s a red herring. It will be funded regardless and gets 99% of a billion dollar budget.
  •  A healthful lifestyle is desirable for all of us and necessary for heart kids, but the AHA spends 990,000,000 dollars on that and 10,000,000 on CHD and that 10 mil is debatable because it include “trickle down” research.

Now let’s compare the AHA as the leading source of CHD research (not because they want to be but because 1% of a billion is still ten million dollars) to other groups:

  • The Cystic Fibrosis Foundation spent over forty million dollars in 2010 on research. That’s four times as much as the AHA spent on CHD but it gets better because CFF represents 30,000 Americans with CF, and the AHA “represents” 2,000,000 American’s with CHD.  So . . . I’m not good with math but that means CFF is spending close to $1500 per patient on research and the AHA is spending $5 per patient for CHD.
  • St. Jude’s Hospital spends $610,000,000 – yep 610 MILLION dollars treating cancer patients and performing research every year.  According to the NIH about 10,000 kids get cancer every year in the US.  So, let’s multiply that by 18 just to be generous. That’s 180,000 kids (though it’s really less because those kids either go into remission and tragically have a 10% mortality rate). Even at our big 180,000 number that means St. Jude’s alone spends over $3300 per pediatric cancer patient in the USA. That’s not counting what the American Cancer Society and specific cancer groups for blood cancers, brain cancers, etc. spend on pediatric cancer.
  • Progeria, that horrible disease that makes children age prematurely.  They’re research foundation only brought in 1.7 million dollars, but they have 78 patients total in the country. That means they’re spending over $21,000 per patient on research.

WE GET $5 PER PATIENT, and that includes trickle-down money.

Let’s look at it like this. This year alone 8,000 babies will die of CHD that’s more than all the pediatric cancer patients and cystic fibrosis patients combined.  This doesn’t take into account all the 2-50+ year olds who will die from CHD this year either.

This is all private nonprofit funding.  When we look at government funding, only 3% of the NHBL budget is spent on CHD.  3 cents on each dollar.  I don’t think it’s wrong to expect more from the AHA IF they’re going to use the faces and stories of kids and adults with CHD to make some of their billion dollars.

2. Now let’s look at “The AHA’s “other” research might help our heart kids as adults.

Let’s address this now.  The “other” non-CHD research that might ever, possibly help our kids is already included in that ten million dollars.  It’s already been counted.  So, let’s look at the 900 million that is spent elsewhere. It is spent on their administrative, education, and outreach programs and research that is in no way directly relevant to heart defects.  Which brings us to the meat of this issue.

CONGENITAL HEART DISEASE IS A BIRTH DEFECT PERIOD

Coronary artery disease and adult onset heart disease is not a birth defect, it’s occasionally genetic but more often environmental (i.e. you are what you eat, smoke, and sit), and the research and education around that is hardly ever extensible to a birth defect or treating pediatric patients.

Let’s focus on science of this.  CHD is a structural defect of the heart.  CAD is the suffocation of the heart muscle because of unhealthy bloodflow to the heart cause by plaque build up and cholesterol.  Any study of that is highly unlikely to help a baby with a malformed heart, but even if it does it’s important to note:

  • Any cath-based technology for adults with cardiovascular disease has to be severely modified and then approved by the FDA to be extensible to pediatric patients.  Since there’s not as much money to be made on this it takes a very, very long time to happen.
  • Any drug based therapies that are successful in the adult cardiovascular treatment population, again have to be approved for use in children, and the AHA does NOT pay for that. They pay for the adult tests.

Let me give you a stellar example.  My son, Liam has been on ACE inhibitors since he was two weeks old.  There has, in more than nine years, NEVER been a conclusive study to prove that he should be on those medicines.  No one has funded it, but pediatric cardiologists error on the side of caution because it “might” yield the effect it yields in adults in reducing resistance of passive blood flow.

Here is a list of just a few studies we need that would never be “trickle down.” Some of these have been done, but we need more and better studies to get the results necessary to save lives.

  • PLE and liver dysfunction in pediatric heart patients and adults with CHD
  • Plastic Bronchitis
  • PEDIATRIC Single Vent assist devices
  • PEDIATRIC Heart Transplant Rejection
  • Cross-functional medical care studies
  • Family dynamics studies for families caring for chronically ill children whose  disease were once entirely fatal and still might be.
  • Stem cell grafting on artificial valves
  • Calcification of artificial parts used in the reconstruction of structures only applicable in congenital heart defects.
  • Decades of scar tissue and adhesion, and Pediatric scar tissue
  • Studies of EC and LT conduit performance over a larger pool of subjects
  • A database that unifies CHD patient records and improves long term care and follow up
  • Methodologies to teach CHD patients and parents/caregivers about the anatomy and impact of their defects
  • PEDIATRIC neurological studies of the effects of respiratory bypass and ECMO
  • Development of transcatheter techniques unique to the size of pediatric patients and the nature of their congential heart defects
  • Genome studies of CHD patients to assess the basis for observed but unexplained syndromes
  • PEDIATRIC neurological development studies

I guess, in short my biggest problems with the AHA are that it, not me, influences people to:

  • Believe that CHD is getting adequate funding to meet its needs.
  • Believe that  CHD is the anything like adult onset heart disease.
  • Believe that ten million dollars and $5/patient is enough when diseases that impact far fewer children clearly are getting several hundreds time more funding.

I have absolutely NO problem with St. Jude’s or CFF raising and spending that kind of money. In fact I admire them for doing the right thing.  I only wish the AHA would do the right thing too, but until they do see your alternatives.

Finally, I started this series hoping to wield my influence responsibly, but let’s face it, who am I really? I have a tiny little blog, a few hundred facebook friends, and a book without an enormous publicity campaign behind it.  The AHA has a billion dollars and ties to large pharmaceutical companies.    I am just a mom who wants her little boy to “not die,” and I want responsible and targeted research in place to make sure he lives and lives well.

You don’t even have to choose side, but now at least you know who and  what you’re dealing with.

6 Comments »

  1. Thanks you for your series on this topic and putting into words what lots of us are thinking. Have often wondered if it would be possible to bring together the various CHD groups for a more united effort?? I’m sure I’m not the only one to have this thought! (grandmother of a 5 year old HLHS survivor.)

  2. I read your six part series and wanted to thank you. I am a heart mom who has participated in the AHA Heart Walk the last two years. Last year I felt uneasy and considered doing the CHF walk but I opted to stay one more year. I now wish I had gone with my gut. What I found eye opening was your Jump Rope for Heart. My daughter raised money for it and was so excited. I even spoke to another school and publicly spoke for the first time about my son and his CHD. I encouraged those students to help kids like my own. I feel most horrible about that, being part of the deception. Your series has opened my eyes to what I only assumed. Thank you for your research and fact finding. It has taken me off the fence and I now will promote CHF here in Ohio. Thank you!!!

    • Maribeth, don’t feel badly. You didn’t know. I know how you feel though. When I found this out for the first time I felt such shame for invoking Liam’s name and taking so much money for the people who loved us only to find how how paltry the impact would be. It is a huge heart break, and I think that’s why we should make sure people know before they find out the hard way. If people still want to do these events with this knowledge, that is their right, but everyone has the right to know the facts too.

      • Thank you for your kind words. I have always been an uneasy heart mom (and not because I don’t embrace his situation) but more from being his voice for his story. I consider myself a bystander and he should (and one day will) determine how large of a role he wants us to play in the CHD community. His story is his (although not alone as I am not naive to think I don’t carry my own story as his parent). I am just fuming that the one time I open up to strangers about my son and publicly speak I played into AHA’s hand of deceit. I have always been cautious and mindful of sharing our story and his and I slipped. I have a meeting with our local AHA this week. They want to speak to me about my past fundraising for the walk. Poor local rep is going to get an earful. However I feel strong that I need to make my point and hope it doesn’t fall on deaf ears. Thank you for giving the ammunition. I wish you success with your book and hope to read it (with 3 young children that may prove to be difficult). I will also keep your Liam in my prayers. Lastly, I was lead to your blog by a fellow heart mom from Sacramento named Andrea. I am not sure if you know her but she is an advocate and a MLH coordinator. Hope the word continues to spread on your series.

  3. Great job. ACHA (Adult Congenital Heart Assoc) works
    With CHF since kids grow up & bridge over to
    adulthood often times falling out of the care
    System. ACHA is the greatest.
    http://www.achaheart.org/
    Information about the organization for adults with congenital heart defects, their families and medical professionals.

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